Death and denial on the cancer ward: Refusing to accept reality can be shattering to family, study finds

Tom BlackwellFriday, Sept. 14, 2012

Naomi Kogan, a social worker at Montreal’s Jewish General Hospital, speaks with a patient undergoing chemotherapy at the hospital. Terminally ill patients who refuse to acknowledge their prognosis can cause their loved ones anxiety, depression and even rage, Kogan and two co-authors found in a newly published study. Christinne Muschi for National Post

The single parent had been in hospital for months, suffering from terminal cancer but refusing to accept that death was near.

Even the person’s two young children were unaware of the dire prognosis, recalls Naomi Kogan, a social worker at Montreal’s Jewish General Hospital who cared for the patient. Finally, last month, a teenage daughter arrived at the hospital to learn that her only parent would not be coming home — minutes before the person died.

“The impact has been devastating, to have only an hour to say goodbye,” said the social worker. “The child is having major difficulties.”

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Yet such entrenched denial of terminal disease is a surprisingly common occurrence on the cancer ward, said Ms. Kogan, and a new study she and colleagues have just published suggests it can have a shattering impact on the family members who care for those patients.

Relatives struggling to play along with the alternate reality sometimes have to turn a blind eye as the patient pretends to ignore dangerous symptoms, and are unable to share their own emotional turmoil over the illness, the researchers found. Sometimes, children are left completely in the dark.

Ms. Kogan suggests that health-care workers dealing with those people face similar angst.

It’s been such a difficult element in my work for all these years, so challenging and causing so much frustration

“These [patients in denial] are people who until the end are carrying this protective mechanism like a tortoise shell,” she said in an interview. “It’s been such a difficult element in my work for all these years, so challenging and causing so much frustration.”

The patients at the heart of her study, co-authored by Robin Cohen, a McGill University oncology professor, and Michelle Dumas, an Ottawa General Hospital nurse, acknowledge that they have cancer, but tend to minimize the seriousness of the condition that appears destined to kill them.

Despite what would seem like unequivocal evidence to the contrary, one woman in the study remained convinced she would recover, and married her common-law partner — inside the palliative-care ward.

Christinne Muschi for National Post Entrenched denial of terminal disease is a surprisingly common occurrence on the cancer ward, says social worker Naomi Kogan, seen talking with a chemotherapy patient at Montreal s Jewish General Hospital.

When Ms. Kogan started her career 24 years ago, the psychiatry department would be summoned in an effort to help such patients face reality, but health-care workers no longer try to disavow them of their beliefs, now considered a coping mechanism that is useful to the patient, at least.

A Montreal woman, who asked not to be named, said she and her family have been dealing with such a situation for several weeks. A close relative has stage-four cancer and likely has less than a year to live, yet until recently has cheerfully avoided the grim truth of her prognosis. She even talked from her hospital bed about running a half-marathon next year.

She would act as though everything was just fine. It was impossible to even acknowledge she was sick. It was very frustrating and isolating

“She would act as though everything was just fine,” said the relative. “It was impossible to even acknowledge she was sick. It was very frustrating and isolating.”

For the study published in the journal Palliative and Supportive Care. Ms. Kogan’s team identified dying patients at the Segal Cancer Centre who were in denial, and arranged interviews with family caregivers of 16 of them.

All said they felt it necessary to maintain their loved ones’ sense of denial, but that keeping up the pretence of normalcy took a toll in terms of anxiety, depression and even “feeling enraged.” Some said they were forbidden to dig up more information about the disease or ask probing questions of medical staff, or felt they could not make arrangements for funerals or future finances.

More than half the patients went so far as to not get the care they needed, masking symptoms that might have prevented them from receiving more of the chemotherapy they considered life-saving, or that would drive home the dire state of their health, the study said.

One patient refused to disclose such problems as severe diarrhea that should have prevented him from getting chemotherapy, went ahead with the treatment and almost died, prematurely, as a result. Another actually hid weights in his clothes so he would reach the minimum requirement to continue chemo, as patients who are too emaciated are not eligible, said Ms. Kogan.

He’s been crying for the past three days. He’s got pain in the neck, pain in the back, and he doesn’t want me to talk about it

Others would not acknowledge escalating pain, or refused to step up their medication levels in response. “He’s been crying for the past three days. He’s got pain in the neck, pain in the back, and he doesn’t want me to talk about it,” one caregiver told the researchers.

Ms. Kogan said there is not a lot that health-care and social workers can do in the face of such denial, though sometimes they can counsel the family members about their own anguish over the situation, and try to help make practical arrangements.

She said she was able to convince the single-parent patient, after much prodding, to prepare a will, without actually saying the person was dying. The will was a crucial tool for the family as the children started a new life with relatives.

Elizabeth Beddard-Huber, an advance-practice nurse specializing in pain management at the B.C. Cancer Agency, said she also encounters patients in denial, an experience that can be stressful and “hard to watch,” especially when young children are involved. In one case, two teenagers were so troubled by their inability to talk frankly to their fatally ill mother, they began acting out at school, she said.

Like the Montreal researchers, Ms. Beddard-Huber noted that such patients will hang on desperately to the hope of chemotherapy, decline pain medication and other palliative care, and occasionally look elsewhere when conventional medical treatment reaches a dead end.

“Sometimes it gets to a point where they have to spend quite a bit of money to seek extra treatment and go to Mexico or to China or to the States for special treatment,” said Ms. Beddard-Huber. “They’re looking for that miracle.”